This is my first post though I have been reading some and have found this forum to be a blessing.

I am the caregiver for my husband Andres, we are both 35 and have been living with ALS for 5 + years now since it started about a week after we got married. Andres is now totally paralized from the neck down, in a wheelchair for the last 3 years, cant talk and has had a PEG tube for the last year and a half altough he still eats a little ice cream and some liquids.

We live in Mexico and it is hard because there is hardly any information here about ALS , the doctors barely know about it, and we have had almost zero contact with other people going through this ordeal. So I have many questions, especially since reading certain things about how people cope, I don´t know if what we are doing is normal if we are doing something wrong etc. I do a lot of research through the internet.

Not that we really go to doctors, we have opted for a natural aproach, and used some alternative medicine. For example Dr Bach flower essences, rescue remedy, was the thing that helped Andres sleep better after 3 years of sleepless hell for both of us, (that and changing his sleep patterns. He has to be turned in bed about every hour or half an hour. So we went from about 10 times a night to about 5. He uses a memory foam matress and has a hospital bed that vibrates and even so will get nasty red marks on his hips after a little time. This is my question, I have read that some people will stay in the same position all night, that they are nor assisted at night, How is this posible? do they take sleeping pills? painkillers? are there other options?... isn't this dangerous. like if you can't feel the pain you don't move and then are morre likely to get pressure sores?

Andres will not take even an aspirin, he is very tough but he is also very uncomfortable most of the time even though he has a new chair equipped with an alternating pressure air cushion and it is practicaly covered in sheepskin. He has a lot of position related pain. How do people deal with this?

Everything about his positioning which he also needs to be assisted with constantly is extremely precise, to the point that no one is able to help him unless he is rigurously trained before. I have al but given up that a nurse can learn what is needed to spend the night with him, the only other person who can is his father, he is coming one night a week and also gives me a free day. The thing is Andres needs someone (well trained) around him all the time, since he can't talk it has to be someone that understands his signals etc. MAinly that is me.

Is there anyone out there trying to do this without the alopathic medicine? if you use painkillers and other things, what is your experience with them.

He has said he wont use any ventilation support and is already having some problem with breathing, I can't help worrying that he will suffer.

This post is pretty long so I will ask about other things later, thank you for reading this and I would really apreciate any feedback.

Thank you,

Citlalli

hola,
me llamo gabriel, tengo 41 años y tengo ela desde 2003.
también tengo el problema de tener que girarme cada hora o menos, mirá acá
http://www.invacare.com/cgi-bin/imhqprd/inv_catalog/prod_cat_detail.jsp?s=0&prodID=BB9612000&catOID=null
es caro, pero vos estás más cerca que yo para averiguar.
en cualquier cosa que te pueda ser util, me avisás.
saludos a andrés

gabriel

Citlalli:

I pray for you and your husband. You are a great source of comfort to him. That is half the battle.

Gabriel's link looks like a good option, although the bed looks quite expensive. Do you speak Spanish?

Gabriel:

Espero que siguas bien, hermano. Si tienes als desde el 2003, tu condicion esta avanzada o todavia puedes manejarte con minima ayuda?

Hola Citlalli,
I know what you are going through. My husband was dxed at age 40, three years ago. He also had a had a lot of position discomfort and is VERY specific about what he needs...I have a room full of foam, wedges, pillows of all sizes, roolled towels, etc and have about 5-6 different pads under elbows, heels, etc at any time. He could never get comfortable in the hospital bed (that was a nightmare), and sleeps/lives in his recliner lift chair. He sits on a Roho air cushion which helps alot and has memory foam behind his back..his feet are up on a stool of sorts and rest on memory foam with a sheepskin on top. He also never took any drugs at all--not even aspirin..he is very stubborn and I begged and begged him to take something. Over time he has relented and now will take Ibuprofen when things get tough, or tylenol. I have even talked him into Tylenol PM to make him sleep (it has benadryl in it). Also he likes scotch whiskey and that helps too sometimes!!
Basically the lack of sleep makes me so moody--I get really irritable, cry, have tantrums, etc and by morning I am a wreck and I think that is why he gives in sometimes!! I was telling him I couldnt keep it up and would need to get help---and I think he would rather take a pain or sleep aid than have a nurses aide. I have never left him with anyone at night. Like you say, they would have to have 20 hrs of training to get all the details and communication signals down!! I do leave him in the afternoons when a nurse's aide comes for 2-3 hours....often when I get home he is in tears because they cant meet his needs.
He is on a Bipap breathing machine now and will not be venting, so I want to try and be there for him--it won't be forever.
If your husband will try natural, herbal remedies, have you tried Valarian root for sleep? That is supposed to be good.
You hang in there....you are probably much nicer than me ---have you tried falling apart, crying, having tantrums??? I think that is what ultimately worked for me!!:)
Good Luck--nice to meet you. Keep in touch
Beth
P.S We love Mexico--we have a sailboat in San Carlos, Sonora.

Just wanted to add one more thing, Citlalli....
yes, Shannon sleeps in the same position all night long now, he is on his back in the chair, partially reclined (he cant recline all the way because he aspirates saliva and chokes). The Roho cushion under his butt has made this possible.
Beth

Hola!
Siento mucho lo que tu y tu marido estais pasando. Mi marido Daniel, murio hace un ano y medio de ALS. Te escribo desde Toronto, Canada. Daniel necesitaba que alguien lo moviera un par de veces durante la noche. Creo que el calor de Mexico hace que uno necesite mas movimiento, para que la piel no sude. El calor no es un problema que tenemos en Canada - por lo menos no durante el invierno.
Te mando a ti y a tu familia un gran abrazo,
Sunny

Hi Citlalli:

Welcome to the forums, I am from Mexicali, Baja California, Mexico, my husband Jorge was diagnosed with ALS on Oct. 17, 2005 and like you say in our country this sickness is very little known, so these forums are a real blessing for us.

I am sorry your husband has to go through this at such a young age, same age as my daughter.

As you mention in your post me like you have to turn my husband on his sides almost every 15 minutes every night, he refuses to use Rivotril that was prescribed to him by his Neuro, he only took it once and slept thoroughly all night which he didn't like.

Feel free to write either by sending me a private message or by e.mail paty_gilso@yahoo.com

Paty
Husband's Caregiver DX 10/17/05

P.S. MY HUSBAND IS IN A HOSPITAL BED, CAN'T SPEAK, CAN'T USE HIS HANDS OR LEGS AND WE COMMUNICATE WITH AN ALPHABET AND EYE SIGNALS WE'VE LEARNED TO MAKE USE OF.

Thank you all for your replies, You make me feel very welcome!

and for the bed information, but we are well past the time when that would have worked, part of the process of turning him at night has to do with getting him in the perfect position where he can breathe better.

It's a relief to know that there are other people like us out there, I had gotten a wrong impression reading from other overly optimistic and positive messages, that made me feel like a failure. This reassures me that we are doing what we have to do, it is just a very tough road.

Mainly it is hard for me when I hear that life is great with a vent and people are living fantastic fulfilling lives because Andres is so tired of this after 5 years that he looks forward to dying. It is hard and he has no motivation for life in this world. He was an extremely athletic man, had just finished his PHD in ecological engineering and gotten married to me when this happened. He loved walking in the mountains, dancing and teaching, so this disease stripped him of everything he identified with. This has been a huge part of his path, and mine too, the dismantling of the ego and the revealing of our true being.

He is a very spiritual person and dying is a great event for him, he wants to be as aware of his death as of every step of this very difficult path. We call it embracing the suck. That is the main reason he will not take any medicine, to him it feels like rejecting a part of what is given to him to learn from, and interferes with his awareness.

For some time he found great joy in painting with a special hat he invented, but that is long gone. you can see the paintings at:

http://www.care2.com/c2c/photos/view/162/729044042/Pinturas_de_Andres__________________Andr es__039__Paintings/

They are really beautiful.

And, Lunarruna, about tantrums, I have thrown some really spectacular ones, though I can be pretty patient too other times . I wouldn't think I am nicer than anybody here but I sure am strong as hell. I bet you are too.

Much love and blessings,

Citlalli

They are really nice paintings. He has much talent. Have you looked at quadbliss's work?
AL.

Citlalli, those painting are so beautiful, and Andres' spiritual depth is very present in them! You two are such a lovely couple! I must commend both of you on your resolve to embrace the suck. I suspect that you won't need any assurances that Andres will really always be with you. Very best wishes. Sharon

Hi Citlalli,

The painings are wonderful. Andres has the ability to express the beauty he sees in the world around him. :D

Mike

:-D I love this thread! It's great that our spanish-speakers can reach out to one another an our artists as well. How cool!

Welcome Andres and Citlalli :) Cindy

The paintings are truly beautiful. What talent.

I do not know how your husband doesn't take any medication. My friend takes so many muscle relaxants, siezure meds among many others. Her spasms are very painful with the meds, I can't imagine her without them.

The strength that you have each day to do what you can for your husband is amazing. I visit my friend around 3 times a week or so, or take her kids whatever I can to help, and I am emotionally and physically tired some days from the lifting and caring. When I am not with her, I still think about her and feel sad. I can't imagine 24/7, like it is for you. You must be very strong. It sounds like your husband has lost alot from ALS, like my friend who is only 42. You have lost alot too. My heart is with you.

Barbie.